A socioecological framework for engaging substance-using pregnant persons in longitudinal research: Multi-stakeholder perspectives

Ellen Goldstein, Kendra Nervik, Shelbey Hagen, Florence Hilliard, Alyssa Turnquist, Ludmila N. Bakhireva, Ryan McDonald, Pilar N. Ossorio, Jamie Lo, Aleksandra E. Zgierska

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


Objective: Understanding the impact of substance use during pregnancy on fetal development and child health is essential for designing effective approaches for reducing prenatal substance exposures and improving child outcomes. Research on the developmental impacts of prenatal substance exposure has been limited by legal, ethical, and practical challenges. This study examined approaches to engage substance-using (with an emphasis on opioids) pregnant persons in longitudinal research, from multi-stakeholder perspectives. Methods: The present study solicited the expertise of 1) an advisory group of community stakeholders, including people with lived experienced of opioid/substance use; and 2) an online survey with content experts. Qualitative analysis examined facilitators and barriers to recruiting and retaining substance-using pregnant persons through a socioecological lens at the individual, interpersonal, organizational, community, and policy levels. Results: Stakeholders (N = 19) prioritized stigma, loss of confidentiality, legal consequences, and instability (e.g., homelessness and poverty) as important barriers that prevent substance-using persons from enrolling in research studies. Of 70 survey respondents, most self-identified as researchers (n = 37), followed by clinicians (n = 19), and ‘others’ (n = 14). Survey respondents focused on retention strategies that build trusting relationships with participants, including incentives (e.g., transportation and childcare support), participant-friendly study design, and team-related factors, (e.g., attitudes and practices). Conclusion: The stakeholder input and survey data offer key insights strengthening our understanding of facilitators and barriers to research participation, and ways to overcome barriers among substance-using pregnant persons. A socioecological framework can be used to identify and address these factors to increase recruitment and long-term retention of high-risk populations.

Original languageEnglish (US)
Article number106997
JournalNeurotoxicology and Teratology
StatePublished - Sep 1 2021

All Science Journal Classification (ASJC) codes

  • Toxicology
  • Developmental Neuroscience
  • Cellular and Molecular Neuroscience


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